Friday, 18 May 2018

Field Notes from a Medicare Disaster: Four

It was the Ides of February, 2016. Toronto was as grey and damp as an old dishrag. I was working hard on a new project that involved prying politically embarrassing information from the death grip of the University of Toronto and the even more secretive bureaucrats of the Department of Canadian Heritage. When I am on the trail of a good story, especially a hidden one, I tune the rest of the world out. I didn't hear him when he called the first time. I did hear a bump, but there are always bumps and thumps in our old house, usually emanating from its ancient radiators. I heard the second call though, because there was an edge to it, a determined calm stretched tight over panic like emotional plastic wrap. Daughter number two tells me I was on the phone with her when I suddenly said, gotta go, Dad needs help, and hung up on her. I have no memory of that. I do know that when I ran down to the kitchen, I found that he had fallen to the floor, couldn't get himself upright.

We had lately had a few of these moments of radical awkwardness, though nothing as serious as his fall at the cottage the previous summer. He had been finding it harder and harder to get his feet under him after a stumble unless he had something big, like a door, or a grab bar, to pull himself up on.  I am still strong ( not as strong as in my early twenties when I held back, with one hand, a tipped over 200 pound light stand about to squash my puppeteer colleagues in the middle of a show). Yet I found it hard to help him get up. He couldn't seem to cooperate with me. It wasn't as if I was trying to move dead weight, it was that his weight seemed to have a confused mind of its own working against my best efforts.

Being faced with my inability to do something always annoys me, and so I was annoyed. I looked for someone to blame-- him. How the hell had he managed to fall in our small kitchen which has so many things to grab hold of within easy reach? Like the counters? Like the fridge?

I don't know, he said. I don't know why I fell.

Somehow, I wrestled him up and onto a chair, which is when I  realized his neck was red with blood, and there was a red splash on the white fridge too, and ohmigod, a long smear across the floor. What the hell, I yelled, and then deliberately forced myself into a different state, a semblance of calm, because I also noticed, finally, that the bottom half of his left ear was dangling by a shred of skin, just hanging there beside his neck as his blood ran bright and free.  My father had been reliably cool in the face of frightening things such as this, including: eruptions of blood from my friend Ian's broken nose (Dad actually reached over and pulled Ian's nose sideways, back and forth, to make sure it was broken: yup it's broken Ian, he said); or, when I passed out during an asthma attack on another kitchen floor (he'd kept adrenaline in the fridge for just such an occasion). His capacity to cloak himself in deliberate calm helped make him a good surgeon. Yet it wasn't natural to him so he had developed interesting methods to soothe himself when faced with unexpected disaster --such as things going south in the operating room.  He told me that he just stepped back from the operating table, sometimes turning his back on it altogether, and then he hummed or sang a jaunty tune. Didn't the OR nurses find that strange? I asked. They never mentioned it, he said.

I don't sing when I'm scared. Instead I grab hold of my voice and wrestle it down from wherever it's perched to something steady and low which settles me as I hear myself speak.That allows me to step away mentally just long enough for thoughts to gather, so I can organize what to do and in the best order. I heard myself say, in a very neutral voice, hey, your ear doesn't look as pretty as usual, which is too bad because I've always liked your ears. And then I did what I'd learned in first aid class, age 16, from one of my Dad's partners, Dr. Noel Doig. He too had been a leader of the Doctor's Strike. He had immigrated to Canada to get away from Britain's National Health and spent many hours explaining to his Saskatchewan colleagues exactly why the National Health didn't work well, exactly what had to be avoided in Saskatchewan for doctors to do their jobs properly. He was a bright, ethical, empathetic man with musical talent: he built a clavichord in his basement one winter just for fun. And he had a talent for teaching too. He told a memorable story to my first aid class which encapsulated a simple way to slow a rush of  blood pumping from a limb  He described what happened when an older woman fell down on a London street and a varicose vein in her leg burst. A good Samaritan came upon her in a rapidly expanding pool of blood. He  tried to engineer a tourniquet from his necktie, but she was saved by another bystander who knew better, who simply lifted her leg above the level of her heart, then applied pressure. Remember, he said: first, elevate the limb, then apply pressure, then get help.

Elevation is not really applicable to a half- ripped off ear because, unless a person is already lying down, it's well above the heart. So I grabbed a pile of clean dish towels from a drawer and applied pressure, then replaced my hand with his while I called 911.

Why are you calling 911? he asked.

Because your ear is half off and there's a lot of blood pouring down.

Just get me a bandage. I'll be fine, he said.

You need someone who can sew it back together, I said. I mean I could try, but you wouldn't like it.

The paramedics got there very fast.They crowded into the kitchen. He told them what he hadn't told me, that when he fell, he'd caught his ear against the freezer handle on the bottom half of the fridge. All 220 pounds of him had landed on that ear. No wonder it was torn. Had he also concussed himself? Again? He was confused, I thought. So, probably. But his eyes tracked as they should according to the paramedics.

But we'd better take you in anyway, they said, and bundled him out the front door and down the front porch steps on one of those clever, step-climbing chairs.He kept trying to get his arms loose from the straps, even when they transferred him to a wider gurney. They weren't happy about having to push that gurney across our flagstone path to the curb-- well, we call it a path because once upon a time it was a path, but now it's a mess of broken stones heaved in all directions by frost. It's old. Like us. Not good Miss, they said, as if they knew they'd be coming back again, and again, and I'd better reno the access route before the next time.

Daughter number one made her way over to the St. Mike's emergency after the ambulance brought him in. She was not happy, in fact she was really, really concerned. I tried to assuage her fears.  Not so bad, I said, just a tear, they'll sew him up and that'll be that.

We waited for quite some time for a doctor  whose specialty included sewing ripped ears back together.  I would have thought any emergency doctor could do that, but apparently that is not the case. An otolaryngologist is required.We waited,  and we waited, jammed in a a cubicle.When said specialist finally appeared,  at least ten hours after the call went out, he was moved to another room down the hall where he could be sewn up, a room I mainly remember as large. The emergency doctor in charge, a nice woman, told me he'd be able to go home after it was done.

Daughter number one pulled me out into the hall.

We need to have him admitted, she said.

We do? I said.

Yes we do, she said. He keeps falling, and we need to find out why.

But the emergency doctor said he could go home, I said. And his MRI is scheduled for next week.

I don't know why I argued with her. Maybe I wanted to hold at bay the idea that something was seriously wrong. After all, that doctor who discharged him from this very hospital in the summer had insisted everything would be fine, all he had to do was count to ten after he stood up and before he took a step. The neurosurgeon had been concerned,  yes, but not certain what exactly the problem was.Thus the MRI.

The MRI is scheduled for the middle of the night, she said. They could do it while he's an inpatient much more easily. What if he goes home and falls again?

Good point, I said.

Please let me handle this, she said. Just let me do this, because you won't use the right words.

A fraught moment of decision: should I hand over my role as the adult person in charge of his care to a daughter who had been a child herself seemingly moments ago ( okay, okay she had two children of her own, but still...). Age makes itself known when a parent finally recognizes that her children have acquired skills not readily at hand in her own bag of tricks. I remember my Dad still deferring to my grandmother though he was a doctor with three kids and a huge medical practice, while she barely spoke English and her education was of a different order altogether. He considered her the smartest person in the family. I wanted to go to a convention in Vancouver with a youth group I belonged to. I'd had a bout of asthma that had almost killed me and he thought it wouldn't be safe. I appealed to her. Are all the other kids going? she asked him. Yes, he said. So she goes, said my grandmother, and that was that, I went.

Daughter number one had by then spent several years working  on policies related to physicians and their work. She knew the jargon and the rules; she knew which phrases would resonate, which policies could be referred to, trigger words in effect. I know  how to ask sufficiently probing questions to expose a system's failures but that is altogether different from getting systems to behave and do what they're supposed to. What we needed was relief from a patchwork of appointments and incoherent information with no responsible physician  to make sense of it. We needed a proper  work-up in the hospital by someone who had  access to all the gathered evidence and who could get more as needed. Okay, I said. Do it.

She took the emergency room doctor out in the hall. I know she explained the history, what remained to be explored, that  an MRI had been ordered by a staff neurosurgeon in this very hospital, scheduled to be done in a few days, that there had been a serious fall requiring hospitalization only a few months before, and several little falls since, and now this--yet there was still no diagnosis. She  pointed out the danger of letting him go home, the liability that could ensue.  I kept out of it as ordered, although that phrase of hers, you won't use the right words, had really got under my skin. After all, if I am anything at all it is a purveyor of correct words.

When the two of them came back from their huddle, I was told that he would be admitted after all, it was just a matter of finding a bed.

Is that how it works now? I said to daughter number one, after the doctor went away. Does one have to know trigger words to get the correct response, to get reasonable, responsible treatment?  Is that what this system has come to? That smacks of Israel where you need protectzia to get you in the right doors. 

Protectzia means exactly what it sounds like. You know somebody who knows somebody important who can take you out of that long line up with a wave of the hand. It means there is no real equality, only differing degrees of power.

It's not about protectzia, she said, it's about the right words.

But it's the same problem if only a few of us know what those words are.  Equality of care for all, regardless or bank balance or personal relationships, was the foundational concept underlying Medicare, wasn't it?

Friday, 11 May 2018

Field Notes From a Medicare Disaster: Three

You would think that I would remember the exact whereabouts of that neurosurgeon's office, wouldn't you? I mean, come on,  he was the focus of hope. Yet that detail is ensconced in some brain cell no longer accessible. I know this: it was either in St. Mike's itself, on a floor with plain-as-Jane offices, or, it was across Queen Street in the Medical Arts building. ( It is perilous to stop a car at its front door so as to deposit a disabled patient for his appointment, because its front door is actually a catty corner door. Yet it must be done, otherwise a halt and lame patient is forced to cross one of Toronto's busiest streets.) The neurosurgeon's office was off a dark, narrow corridor that also served as a waiting room. There were people sitting on hard chairs in various states of misery waiting their turns. I found myself watching the gait of every patient who walked past me. I felt a ridiculous spurt of envy if they walked normally. Even more disgusting, I actually consoled myself with the poisonous certainty that their brains must have gotten up to some other malicious though invisible trick because no one comes to see a neurosurgeon about something trivial.

When his name was finally called, at least three quarters of an hour late, which had prompted a desperate bathroom hunt, he walked down the long corridor shuffling his feet, not quite upright, not quite balanced, shoulders rolled forward. I had by then decided that not being able to walk well changes everything -- from social life (one only goes where one knows there is a bathroom close by) to basic personality (walks for pleasure are over, so there are no more hi-how-are-ya-what's-happening conversations with neighbors which is a punishment for a man with a buoyant personality, in this case one who had also made a lifelong habit of saying hello to every street person, asking if they had a place to sleep, and offering advice on how to find same). I'd watched my father,  another sociable man, deal with being house-bound too, and it had been very hard. There were outbreaks of cabin fever, arguments over nothing fought with passion. It was osteoarthritis that crippled him. For much of his adult life he'd been an avid golfer and a ferocious handball and racquet ball player, and before that, he'd been so devoted to hockey and football that he'd flunked first year university because he was on both of his school's teams. He golfed until his late 80s -- until he made the mistake of looking at X-rays of his back and shoulders which made clear exactly how much damage osteoarthritis had done.That's when he finally permitted himself to take a cortico-steroid-- prednisone--to damp down the inflammation and suppress the pain. It's a powerful drug with nasty side effects, such as thinning skin which bruises and sloughs from the smallest pressure. His hands and arms soon sported bandages and gauze. As soon as he looked at the X-rays, the pain became something he could no longer ignore and golf was over.

Yet for quite a while longer he was still able to walk with his usual gait, that happy martial rhythm with a hop-limp on the right leg thanks to the hip replacement after he retired. And he was still able to do his PT-- push-ups and sit-ups and stretches-- every morning. He explained that it hurt, but that he had to do it. If he didn't keep moving, the arthritis would become so bad he'd be unable to walk, period. That day finally came after he ruptured an aneurysm that ballooned out of his aorta. He was 89 by then: when the aneurysm burst, his blood pressure collapsed and he dropped like a stone to the kitchen floor. The young emergency surgeon who took care of him informed him of the survival probability of the repair surgery -- it's like 10% Sam, he said, what do you want to do? Figuring 10% was better than zero, Dad said go ahead, do your work. That meant cutting him open like a fish to be filleted, or as he liked to say, from his gullet to his zatch. His recovery was long and tortuous. After that, he only walked short distances in his condo using what is called a rollator, and settled into a wheelchair at the very end. He stayed sharp, though. And so he never stopped berating himself for failing to diagnose his own aneurysm. He'd felt a thrumming in his belly while doing push-ups before it burst, he told me. He should have known.

But what would he have done about it, I wondered, if he had put two and two together before that rupture? Would he have asked for surgical intervention? Or would he have thought: I'll just leave it be and hope for the best. That question had haunted me as the appointment with the neurosurgeon came closer. I'd been reading the science papers on normal pressure hydrocephalus which we'd asked the neurosurgeon to investigate and which the CT scan would shed light on. The treatment is a shunt inserted into the brain which redirects the overly abundant cerebral spinal fluid down through a tube into the gut where it is harmlessly absorbed. But about 40% or these surgeries fail to alleviate symptoms and brain surgery is not for the faint of heart -- in other words, for this high risk, only 60% of patients get any reward. Worse, the papers I read asserted that there is no reliable way to judge which patients will do well after this surgery and which won't. The CT scan would reveal enlarged ventricles, yes, and enlarged lateral ventricles have been correlated with unsteady gait and other hydrocephalus symptoms. But just having enlarged ventricles is insufficient to make a firm diagnosis: tapping the spinal cord and measuring the fluid flow is a more reliable determinant. Yet a spinal tap has risks of its own serious risks. What if the neurosurgeon recommended it? What if something went wrong with the tap, never mind the insertion of the shunt, and he ended up worse off than before yet without conclusive information about why his movement was disordered? What if he couldn't think as well as before? He makes his living with his brain. His intelligence is central to who he is, or so I thought at the time. I had just finished writing a book on the nature of intelligence. In the course of researching and thinking through what I'd learned, it had become increasingly clear to me that intelligence is displayed by all living things, right down to the smallest bacterial cell, because it is a function that emerges from interaction with a dangerous world. Further, there is no dividing line between brain and body, mind is body.

The neurosurgeon sat with his back to the door, at a very ordinary faux wood desk. There were two unremarkable chairs for visitors. No one around here was wasting the public's pennies on decor. He had his computer on. The screen displayed a cross sectional image of a brain, except it looked like a top down view. I could see the ventricles, white snakes among black and white structures, and big gaps where the brain seemed to have pulled away from the skull. The image was so clear I almost fooled myself into thinking I understood it, that if I looked closely I might spot weirdnesses --lumps, bumps, tumors-- though I had never seen such a scan before, so why would anything about it look right or wrong to me?

The neurosurgeon was dressed in scrubs again, but this time, instead of a surgical cap, he was wearing a do rag on his head, a red one. I didn't even recognize him until he spoke, because it had been months, five to be exact, since he came to that hospital room and asked us to get him this CT scan. If by chance there had been a tumor growing in the brain shown on the screen before him for all that time, it could have acquired significant size by now and this CT scan would not show it. He pointed to the ventricles on the screen, and said that they did look enlarged, but not a great deal bigger than they should have been, and he said there had definitely been shrinkage of the brain, though that was consistent with age and didn't matter much. (I was familiar with the case of a man in France who had a CT scan done late in his life which revealed that half his brain was missing entirely, probably always had been missing, yet his performance on IQ tests had always been perfectly normal and he'd been able to live well and hold down a job with no trouble at all.) The neurosurgeon asked more pointed questions, asked him to stand and walk for him, felt his arms, tested his reflexes. Finally, he said he needed more information before he could diagnose because there were many possible reasons for unsteady and increasingly awkward gait. We had already ruled out one possible cause --a middle ear issue. He'd been referred by his fill-in family physician to an otolaryngologist. When he walked into that man's office, where the patients spilled out into a corridor with no chairs and the wait was several hours in duration, the otolaryngologist had taken one look at how difficult it was for him to walk to the examination chair and said, with alarm, I can see by your walk that this is not an ear problem, this is a neurological issue. But we asked him to do the appropriate tests anyway. The results had been forwarded to the neurosurgeon. They were all negative.

Look, the neurosurgeon said, let's see if we can find out more with an MRI. I'll order one for you, you can do it here in the hospital, you won't mind if the appointment time is like three in the morning, right? That way we can get it done faster.

I wanted to protest but I kept my mouth shut. I was getting better at keeping my mouth shut. Getting him up for an appointment in the middle of the night, in the winter, was going to be no fun whatsoever. But what choice did we have? If you must stand in a hall for three hours because there are no chairs left in the waiting room due to the fact that your otolaryngologist's secretary books patient appointments at five minute intervals, you learn to suck it up and do it without protest. If that doctor orders tests done at a place many miles from where you live, in a lab located in a suburban strip mall that looks at best iffy as a place where decent scientific evidence may be gathered, you go and submit to their requirements anyway, because what other choice is there? If a hospital neurosurgeon says the fastest way to get an MRI done in his hospital is to get up in the middle of the night, even though you are not well and nights are worse than days, you say right, thank you. Ready aye ready.

You'll be contacted, he said. In the meantime, there is nothing I can offer you.

Yet we still liked him. He was personable. He was reasonable. He was razor sharp. And above all, he was reluctant to tap a spine or open up a skull in order to fish around in a brain until he was sure there was a reason for it. This alone earned my trust. My father always used to say, when it comes to a choice of surgeons, pick the one who has the most experience with the operation in question. If you must choose between two surgeons of equal experience, favor the one who is reluctant to cut.

The MRI appointment secretary sent a letter with detailed instructions. The date? Mid February. Four more months.

Friday, 4 May 2018

Field Notes from a Medicare Disaster: Two

If a journey through our health system teaches anything, it is that each hospital is a character in the larger narrative -- each has its own personality, flaws, quirks, and story arc. St. Michael's Hospital is Dickensian, rooted firmly in Toronto's 19th Century when one's religion defined one's status, friends, diet, and prospects, and most citizens were Anglican or Catholic. There are religious symbols everywhere -- statues, crosses, more statues, stained glass -- throughout its warren of old and older wings which are as confusing to navigate as a prairie dog city. The ceilings get higher and the rooms bigger as one moves to the newer zones, not because people grew taller over the last century, though they did, but because there are so many more electrical cables and pipelines carrying the wherewithal of technological medicine. Fading, flaking colored lines painted on the floors direct visitors' feet to the right wing and the right set of elevators. During the week, the main floor, with its entry off Queen Street, is overwhelmed by visitors and outpatients moving shoulder to shoulder through its narrow halls, like salmon fighting their way upstream against the onrush of wheelchairs, gurneys, or construction crews moving in the opposite direction. It's like the Path under Toronto's downtown streets when the office towers empty for lunch and everyone hunts for a food court at the same time.

There are 900 beds at St. Mike's if you don't count the ones on which patients lie in the halls or in the trauma center waiting for a real one. Its reach extends right across Toronto. It merged last year with St. Joseph's Hospital which is many miles away in the west end, and with a rehab hospital/long-term care facility called Providence, which is in Scarborough, far to the east. It seems to be in a constant state of renovation. There are construction crews, trucks, staging areas piled with equipment and scaffolding all around the block-and-a-half it occupies. There is an elevated glass bridge connecting the 1950s version of the hospital to a shiny, glass-walled research center named after Hong Kong billionaire Li Ka-shing (whose story is also Dickensian). St. Mike's is a bridge between two groups who usually avoid each other, the very poor and the very rich. The realm of money--Bay Street/Banks/TSX/legal empires -- is to the southwest. The gay Village is northeast, the theater district is north west, the poorest parts of Cabbagetown are south east. Next door, in front of St. Michael's Cathedral, there is a small park with a few benches where the homeless sprawl winter and summer. When it's bitterly cold, they plunk themselves on the deep chairs in the hospital's front lobby, their worldly goods arrayed around them. No one rousts or disdains them as they sleep, not even the rich ladies clad in serious furs who have come for appointments upstairs. No one rousts the nicotine-addicted patients either when, in their gowns and not much else, they gather outside the front door with their IVs and urine bags hanging off their wheelchairs, smoking, smoking. St. Mike's treats the poor and the bereft according to Christian principles. Yet if one is not a Christian, and many of St. Mike's patients are not, the Christian heart on its sleeve can be disconcerting. I went there first when eldest daughter gave birth on its maternity ward. The elevators opened on a larger than life-size statue of the Virgin Mary. What's a nice Jewish girl doing in a place like this? I asked her. She shared a room with a woman whose female relatives all wore hijabs.

She was there because she had found a wonderful doctor at St. Michael's family practice unit, a woman so smart, so caring, my Dad would have asked her to join his practice. The family practice unit is a little north of the hospital, on Bond Street, beside the former townhouse of William Lyon Mackenzie, first mayor of Toronto, ardent publisher, anti-corruption agitator, rabble-rouser, democrat. He was also a leader of the 1837 rebellion which failed to usher in a brand new democratic day while ushering out the Family Compact who ran everything their way. (Two of the rebels were hung, others were transported to Australia. William Lyon Mackenzie fled to New York where he worked as a journalist for ten years until it was safe for him to return, after which he fell to rabble-rousing again.) We owe thanks to him for many ideas about government that we now consider self evident.  His house was saved from destruction when his grandson, Mackenzie King, was Prime Minister. It's a museum now.

Two days after his fall and his evacuation from cottage country to St. Mike's, he was moved to an upstairs bed. He'd spent  48 hours in the bowels of its trauma center. He'd lain in a cubicle separated from its 24/7 hustle only by curtains. There was no daylight, no darkness either, the air was neither warm nor cold, humid nor dry, there was no season at all. Curtains did not grant privacy or stop the sounds of others' suffering in the cubicles nearby. He needed help with all his functions. This was provided by nurses who never batted an eye at what they had to do. Patients in his state, only part way to lucid, don't seem to care about these indignities. Perhaps they aren't indignities at all, perhaps we just think of them that way because we have forgotten our dependent childhoods. Or we remember too well. In a short time, it is no longer indignity, it is the new normal.

They moved him upstairs to the neuro ward, the place where injured brains come to heal. There were windows along one wall with a view of brick walls and rooftops.There was a bathroom for patients able to make their way to it. No one in that six bed room could.  There was a cross over the door. He is a convinced atheist but wasn't really in any condition to notice or object, at least not at first.  After he noticed, it made him laugh. A nurse sat at a desk in the center of the room at all times, keeping careful watch on each patient. It was not an ICU, but it wasn't a standard hospital room either. Beep-beeping machines read out how much oxygen was in his blood, graphed his heart rate. The urine bag showed his kidneys were functioning. The pressing questions I had were: when will he remember his computer passwords? What if he can't? How could I have been so stupid as not to write them down?

About four days later he was moved to another room with four beds. One was occupied by a young man who had been in a terrible accident. He had lost a hand and a foot and his head was bandaged and he moaned frequently. The language seemed to be Tamil but we were never sure. There was another older man on the other side of the room who had constant hiccups and whose wife came only in the afternoons because they lived outside the city. The fourth bed was empty. Slowly, slowly, panic died away as he became more and more himself and began to do what he always does which is to make friends with whoever is near by. Soon, he remembered all his passwords. But he couldn't remember the accident, and he kept repeating the same questions about it over and over. It was as if he couldn't take in new information about it, as if any new detail given to him was immediately erased.

On the third or fourth day, I cannot remember which, he was able to get up from the bed and sit in a chair. He needed help, but he could do it.  They took out the catheter. Soon he could make his way to the bathroom using a walker. This was good because the nursing care was less attentive in this room. We often had to go in search of supplies, or the meal tray. The nurses seemed to spend most of their time sitting at portable computer stations lined up in the hall beside each patient room door like so many study carrels. They stared at screens indicating the scheduled medications for each patient, their diet restrictions, the names and emails of the residents in charge, phone numbers of family members, physio delivered, social workers consulted, tests ordered, test results returned, and on and on.

Eldest daughter had by this point become militant about finding out what in hell was going on with him. The strange gait, the unsteadiness, the gut issues, the sepsis and now this terrible fall -- we need a neurological workup, she said over and over, we need to know if this is about those ventricles, because if it is, there's a fix, you put a shunt in the brain to drain some of the cerebral spinal fluid away and things get better. So we prevailed upon a resident who came in to see him to ask a neurosurgeon to come by. Eventually, a very clever fellow appeared, in his forties from the look of it, fresh out of the operating room, wearing surgical cap and scrubs. He asked a lot of questions, good, sharp questions, said he could not offer an opinion without more investigation, said his office would set up an appointment after discharge. We liked him immediately. He was the first physician encountered  who seemed very interested in the unfolding events that occurred before the fall.  We explained that he'd already seen a neurologist who had ruled out Parkinson's after ordering a CT scan. Have that sent to me, he said. 

That turned out to be difficult.  It required phone calls to the physician who had taken over his file from his former doctor who'd retired. The secretary muttered about a fee in exchange for a letter to the neurologist asking for the scan. I muttered back. The letter was sent. The neurologist 's secretary needed a signed letter of authority to release information, which required a trip down to that office, followed by another trip to pick up the data.  Was it a disc? A thumb drive? I can no longer recall. The scan had been done in another hospital only ten blocks across town and should have been instantly transmissible electronically. But apparently that hospital cannot transmit data direct to the St. Mike's network. Was this a system problem? Or a system-wide choice to protect privacy?  So far as we were concerned, hospitals ten blocks apart might as well have been in separate countries.And what if I had had as much difficulty getting around as he was having? What if he didn't have a family member able to help? What if my language skills and prodding skills were not up to this task? Would information transfer have stopped right there?

It had been almost as hard getting information about his condition from the team in charge of his care on the ward. Whenever a new resident entered the room, which was frequent, I   asked: did he have a concussion? He'd hit his head against a stone wall hard enough to break that stone, so of course he had had a concussion, though none of them actually confirmed that. I had been told there was no brain bleed or undue swelling down in the trauma center. So why did I keep asking? Because he was so slow to get on his feet. There didn't seem to be a plan to help him, either. No one mentioned physio, that the brain benefits from carefully tuned and practiced movement. I kept explaining his out-of-the-box brilliance, how fine a mind he has, as if to say, come on, this is a man who is really worth saving, so what must we do to heal him? They were so vague I came to the conclusion that, given his age,they were writing him off.

But it is also true that even as I asked about concussion, I didn't really want to hear anyone say yes, he had one. I'd been reading about the effects of concussions on professional athletes who'd had their bells rung over and over, some of whom were so troubled that they'd died too young from suicide. Several, who'd allowed their brains to be autopsied by scientists studying the effects of concussion on the brain, had developed tangles of proteins where they should not be. Forty years earlier, my guy had made a film about  Mohammad Ali who he considered the most marvelous, graceful athlete to enter a boxing ring. By the summer of his fall, the summer of 2015, there was no more floating like a butterfly and stinging like a bee for Mohammad Ali. He walked with terrible difficulty, shuffling, halting, shuffling again. His voice had become a low, rough rustle, instead of his old confident shout. He was said to be suffering from Parkinsonian syndrome which some doctors connected to the hard shots he'd taken to his head over the course of his career. Well my guy had had his bell rung doing sports too. I'd heard the stories. There was that hockey puck to the eye when he was a high school goalie. It had knocked him out. His eye was swollen shut for a month. And what about the relentless pounding he took on his high school and university football teams?Maybe he was going down the same path as Mohammad Ali?  Later I learned that Ali had had bouts of sepsis too.

But the neurologist had ruled out Parkinson's, I reminded myself, joining Parkinsonian syndrome to Parkinson's in my head. Why not? A similar name, surely similar causes and effects?

Finally, his nurse said he was to be discharged the following day. The senior doctor in charge of his care at last sat down to speak with us, right in front of the other patients in the shared room, just as he'd sat with the hiccuping man and his wife the day before to explain the man's probable fate-- not a happy one. 

It seemed to me I'd been chasing this man for too long: he was never around when I was there to visit and I was there every day for two weeks. We were like ships passing in the night: either he had done his rounds already when I got to the hospital, or he planned to do them after I left, and though I often went to the nursing station to ask after him, he was nowhere to be found. The nurses said I should leave a message, which I did, but follow up was nil.  He sat in the only unoccupied visitor's chair while I stood beside the bed.  He asked again exactly what had happened, how the fall had occurred. We explained about how we'd all been sitting around visiting for a few hours when he got up to go to the bathroom, but no one actually saw him fall, so we couldn't say whether he'd stumbled, or something else had happened.

I'll tell you what happened, he said. It's like this: he was sitting for a long time, and then he got up and walked toward the steps, and he probably had an older person's blood pressure moment. Anyone over 60 should not move quickly after getting up from a chair because the blood pressure can drop suddenly. You need to give your heart time to catch up. Okay?  That''s what likely happened. So count to ten after you get up from now on, okay? And you'll be fine. Yes there was a concussion, of course there was, but no bleed, no untoward swelling, you'll be fine. Just fine.

I clutched at this explanation and this reassurance like a safety rope in a white water raft. And after I got him home, I became instantly religious-- about counting out loud to ten whenever he got up before I'd let him take a step.

I waited for him to become just fine. But he was more and more unsteady, the walk kept getting worse.

I began to count the days until we could see that neurosurgeon. And asked eldest daughter to find out if her physician would take us on.

Friday, 27 April 2018

Field Notes from a Medicare Disaster: One

2 Persons  Holding Their Hands
Medical mysteries are like Tolstoy's unhappy families-- none is mysterious in exactly the same way. As with any other suspense story, each new clue seems relevant, salient, and vital--until it's replaced by the next. And there's always a next.

I don't remember when I first noticed that something was not right with him. I'm pretty sure it was after granddaughter number one made her way into this world, so not that long ago. I was surprised, even irritated, that he declined to go for long walks, that he declined to dance. He used to love a good walk, was enthusiastic on a dance floor, even on the kitchen dance floor. At first I took it personally. He's done with me, I thought. What do you expect after so many years squabbling and loving each other? So there was nothing really wrong, nothing to worry about: after all, he was still playing tennis, wasn't he? But then his enthusiasm for that began to fade too. He had been an avid player for thirty years, ever since those private lessons from a pro on a private court in L.A.'s Mandeville Canyon. After he acquired his cruel serve, he loved running for hours under a blistering sun, pouring monsoons of sweat while sizzling aces past much younger men, men less than half his age.

There were twists and turns to this developing not-rightness, but let's just say that in retrospect, it must have started long before he paid attention, long before he stopped walking unless he had to. Moments of obvious illness were so transitory. Stomach issues came and went, though he had enjoyed an iron gut (except when migraines kicked in, but they'd stopped decades ago, ever since they shut that coal-fired plant near the downtown core). He was a fan of TexMex and Sichuan and Indian curries hot enough to make steam rise off his scalp.  But suddenly he was seized by the runs. We searched through science articles online, read the new work on the microbiome. It raised this question: could it be that the antibiotics his doctors and dentists had shoveled into him for sinus infections and root canals had killed some important biota in his gut?  Or was he developing IBS? Or Crohn's? A gastroenterologist examined him with a scope, found inflammation, prescribed yet another antibiotic and after examining him once more a few days later, assured him he didn't have either, just a little stray inflammation which had disappeared entirely. After that, he loaded up on probiotic yogurt whenever he was prescribed an antibiotic. It helped. We put the gut issue down to sliding into his sixties.  As one clever elder cousin likes to say, aging is a long surprise.

And so it is: it turned out that all that was prologue. At some point, he acquired a new posture. His arms slumped forward when he was standing still and his head drooped. He couldn't seem to make his arms swing in a coordinated fashion when he walked. He said there was something wrong with his left thigh, and sure enough,  calcified scar tissue was discovered there, the result of a muscle tear ( yes, a tennis injury) that had to be broken down with ultrasound, followed by physio.  But the physio didn't seem to help: his walk continued to change. His feet made sssshing sounds on the pavement. I had always been able to spot him far off, even on a crowded street, because of the sway of his big shoulders, the way his feet kicked from side to side, a confident, rollicking, even arrogant stride. I shouldn't be hearing your feet drag like that, I thought, I should be hearing your heels hit the pavement first. What is that about? 

Then he began to say he felt unsteady. Not dizzy. Unsteady. What in hell is the difference, I'd ask. He couldn't explain but he was adamant. Unsteady was how he felt. I'd like to be able to say exactly when this all added up to something that said go get medical attention, but the best I can do is create a crude divide between good and  not-so-good. Thirteen years ago he was still so strong that he helped paramedics carry one of his oldest friends, brought home in an ambulance from a hospital to die, up to his bedroom at the top of a long, steep flight of stairs. If he was breathless, I didn't hear it.  Ten years ago at an August wedding in Israel I almost passed out from the crazy-making heat and humidity, but he barely noticed, thanks to tennis, and my gut went haywire after a lovely dinner party, not his.  Nine years ago he was perfectly fine, overseeing a  prototype turbine installation for testing down in PEI. Five and a half years ago he was still playing tennis and a picture shows his grandchild number one swinging off his left arm as they walk up from the beach to the car. He's carrying a loaded beach bag with the other arm. He is perfectly steady. His feet are moving the way they always had and his shoulders are as they should be. Yet I do remember he was not altogether right that day.  The gut was acting up again.

Later that summer, one of his associates screamed at me to come quick, he was on the back deck but he was unable to rise from a bench. I was irritated. Big deal, I thought, he's a little wonky, it's a hot day. I went out, saw he was somehow stuck between standing up and sitting down, called his name, got an incoherent response. I felt his skin: he was burning up. I sent his associate scrambling for help from the neighbors. Working together, we still couldn't get him upright so we let him slide down to the deck.  His temperature was 103, his pulse fast and thready. I had to cut his shirt off to cool him down.When the ambulance came he couldn't cooperate with the paramedics.

They took him to a downtown teaching hospital, part of the University Health Network. So we are speaking of one of the best hospitals in the country, in the top tier in the Western world, the kind of hospital medical students hope to do their residency in. In the emergency, they diagnosed sepsis and hit him with an intravenous antibiotic bomb. That night, there being no beds available on the wards upstairs, he stayed there on a narrow gurney.  He wasn't happy. He tried to climb off it, over and over, tried to pull out his IV too, because he was that out of it. He was still out of it the next day, and the day after that.  What brought this on? There had been something dental the week before, no antibiotic given, was that the cause of this whole body infection?  Finally, after two days, they found a bed on a ward for him, the gerontology ward to his dismay, the same ward his mother-in-law had been on a few months earlier.  She is 30 years his senior. 

"I'm not old," he kept saying. "Why am I here?"

"Well technically you are," said the young doctor he complained to. "Anyone over 65 is old."

"I beat men half my age at tennis," he said, meaning age has nothing to do with chronology.

That ward had locked doors leading to the stairwells and the elevators, and there were security guards hanging around, the first time I'd noticed security guards on a ward as well as at the entrance to the emergency where wild behavior does occur. Actual old people wandered these halls with their gowns flapping open, muttering. One elderly woman repeated the same undecipherable phrase over and over as she poked her head into his room, tapped the floor with her metal cane. Musicians sometimes performed in the lounge area, no doubt to soothe these savage ancient breasts. He didn't attend, not being ancient or savage, and besides, getting up to walk was hard. He'd tire after a few yards and had to use a walker to steady himself. As my father was no longer in this world and no longer available to consult, I  looked up sepsis on Google because I could never seem to find the leader of the team in charge of his care to get an explanation. The individuals on the team seemed to change every third day. I was shocked to discover sepsis could have killed him because none of the team had bothered to explain. The nursing care, on the other hand was excellent: on time, more than competent,yet there was something missing from it too. I didn't identify it until much later, when he was in another hospital which has a different culture of care. ("No one is malicious here," one of the nurses there later said," we make mistakes, yes, but we get rid of the malicious ones.") The quality that was missing in this first hospital was kindness. The care was efficient, brusque, unsympathetic. And the parking was shockingly expensive.

And one more thing: while he was there, his own family doctor never came to see him. When my Dad was in practice, a patient's family doctor often went to see his/her patients when in hospital, even if they had no hospital admission privileges and their patients were therefore under another doctor's care. There were good reasons for this, starting with the most obvious: the family doctor knows the patient intimately, knows the history, can advise on past issues, when the patient himself is unable to explain. This is not such an important safeguard when the patient has a family who come to the hospital daily and have some knowledge of the patient's history. But in a society like ours, now, where diversity is our strength, and many of us have left families behind on another continent as we struggle to put down new roots, it can be downright dangerous. As you will see.

He didn't notice his doctor's absence. He was more interested in the flocks of students who came in to examine him. They asked interesting questions about him and his work. He asked interesting questions about theirs.

Soon he was better and then better still, though his digestive tract remained in an uproar from the massive antibiotic assault. A daughter spoke to a nutritionist who recommended a strong course of probiotics, not the pap available in commercial yogurts, but a pill containing several live strains, only on offer at health food stores. He took them for a short time, improved rapidly, and came home.

The dentist was advised to use antibiotics in advance of treatment in future. And from that time forward I paid sharper attention to how he was doing. I noticed little things that I couldn't explain. He'd slump to the side when his office was too hot, or if he was eating outside on a hot summer night, like a plant drooping from too much heat. He didn't notice: I had to remind him to sit upright.  He'd try. Then he'd slump again. He went to see his family doctor, a wonderful diagnostician who still used his hands and his ears and his eyes to examine his patients, an old school kind of doctor trained in Ireland. There might be a neurological issue, he said, after watching his new walk. He made a referral to a neurologist. A daughter conferred with a gerontologist in the UK who had theory regarding too much fluid washing through the ventricles of the brain. He should be examined for that, he said. Six months passed before the neurologist could see him, and then several more months for a CT scan.It showed brain shrinkage but nothing  out of line for a man his age. The neurologist  ruled out Parkinson's. I had no clue why he had considered Parkinson's, but since he'd ruled it out, I forgot about it.

A dear friend of mine died suddenly. There was a memorial that spring. He sat in the back, didn't mingle, which was really unusual, and was grateful he didn't have to walk too far, that there was an elevator. After it was over, he sat on a bench outside in the sun waiting for me while I said goodbyes inside. I found him slumped to one side, needing help to stand up on his own. The husband of my dead friend said: hey, what's going on, he doesn't look well. And it was true: this was a marked change. He had helped them pack their house a year earlier when they decided to move to another part of the GTA. 

A few weeks later he had another bout of sepsis, again following a dental something. By then, walking had become a significant issue, too much heat another. I thought exercise would help, the brain being a highly changeable, use it or lose it kind of place according to  a new school of neuroscientists. He bought Nordic poles to see if he could retrain his brain along with his walk, get into the swing again.

And so we come to the summer of 2015, two and three quarter years ago. 

We decided to go to a cottage with our eldest and her family for a few days though we have always known that taking vacations in Ontario usually ends in disaster for us ( usually someone gets sick, or someone dies, or a tornado tries to take us out on a highway). Let's not call it a vacation, it isn't really a vacation, I said to him, it's a time out, it will be fun. We'll take the poles, you'll walk. 

He did take the poles. He did walk. 

Friends came to visit. We sat on the grass by the lake for hours, talking, laughing. Well, they did and I did. He was quiet. After a few hours, he  got up to go to the bathroom in  the cottage. It was on top of a hill, reached by a long run of stone steps with a stone embankment at their base. He was unsteady getting up: I asked if he wanted a hand on the steps which had no rail. I'm fine, he said, and walked past me.Then someone screamed, the eldest. She lay her baby on the ground and ran past me. I turned to see where she was going, appalled that she had put her baby, grandchild number two, on the grass like that, only to see him sprawled at the base of the stone embankment, blood pooling from his head. He was out, completely out. Three frantic minutes went by as we tried to get the blood stopped, called for an ambulance, checked his vitals, called his name. His pallor was such that I thought he was next to gone. Then his eyes flickered open and his life started again. The ambulance came and the paramedics got him on a back board with his head immobilized. I jumped in the front seat of their van with some of his clothes. They drove with the siren going to a local hospital, one that had no overnight beds and only one doctor in the emergency-- on a summer weekend in cottage country. The doctor did an X-ray, determined there was no skull fracture, picked stone chips out of his scalp and then called for medical evacuation.He was not really coherent, couldn't explain to the doctor what had happened to him, was too sleepy. It took two hours for the next ambulance to come. The paramedics put him in the back, told me I could ride up front. We sailed down the highway into the dark night, going  so fast, so smooth and fast, like an iceboat sailing across a frozen lake. The speed would have been terrifying if I had room for that kind of terror. I was 100% focused on the idea that he might be dying behind me on that backboard. He kept asking if he could turn over on his side. Not yet, sorry, the paramedic sitting with him would say. Over and over and over.

Two and a half hours later, at about three o'clock in the morning, I sat in a dark room in the trauma center at St. Michael's hospital waiting for a verdict. A doctor came in and said he was okay, he had no skull fracture, no brain bleed, he was going to be transferred to a ward, I should go home.

I breathed a huge sigh, and went out into the humid night, got in a taxi, slept at home. Trying hard not to think, trying hard not to focus on the most important question: why had he fallen like that? Why couldn't he remember? Had he misplaced his foot on the bottom step? Or had he fallen because something went awry in his brain? 


Friday, 20 April 2018

Sick as a Dog: Field Notes from a Medicare disaster

You should know, going in, that in my family medicine is considered the honorable profession. My father, a physician and surgeon, once had a lot to say about what would go wrong with a medical care system run by any government. He fought against the imposition in Saskatchewan of what was first described as a "universal prepaid medical care insurance" scheme. This deceitful characterization was offered to the public by Tommy Douglas's CCF government to allay fears that a socialist revolution was afoot. Their plan was to create a replicate of the British National Health system as enacted by the British Labour Party more than a decade earlier. Their motives were pure: they believed it was a moral imperative that everyone should have good medical care regardless of their circumstance and Britain's National Health was the public policy model they chose to employ. However: it didn't fit Saskatchewan. My father and his doctor colleagues, several of whom had immigrated to Canada to get away from the National Health, objected to becoming employees of the State. My father thought governments should not squirm their way into the middle of the doctor/patient relationship. He believed that engendering trust, being worthy of trust, are more than ethical requirements, they are fundamental to the actual practice of medicine. That trust helps patients heal and its creation and maintenance is vital to the physician's art. He never walked into a patient's room in hospital without a silly joke, never spoke to a patient with a joking demeanor if he had to convey bad news. And so his patients did trust him, and though many could not pay him, they loaded him up with cookies and turkeys and other gifts every Christmas and called him at all hours of the day and night. One of his patients even insisted that I must visit him in hospital when Dad was out of town: he just wanted to hold my hand and hear me say that my father would return. He was reassured by being able to touch the flesh of the flesh. In those days, no one could look up their symptoms on their i-phones and second guess every diagnosis and treatment. Doctors were still mainly men, and in some quarters, still seen as demigods -- with real powers.

As a man who'd lived through the Depression and WWII, my father had a jaundiced view of governments' trustworthiness. So he became a leader of the Saskatchewan Doctor's Strike which forced the government to back off its preferred system in favor of one that permitted fee-for-service, allowing patients to hire or fire their physicians while the government footed the bill, and allowing physicians to opt out altogether if they wanted to. After that form of Medicare became law, first in Saskatchewan and then across the country, my father warned that demand for medical services would eventually dwarf all other government expenditures, consuming up to half of provincial budgets, though the health care delivered would be wanting. Why? Governments would try desperately to hold the line on climbing costs, and the bureaucrats would inevitably blunder over which costs could be cut safely.

Here we are, almost 60 years later, and the Canadian Medicare system, the most revered of all government programs, has been transformed from a wonderful idea--that Canadians should have-cradle-to-grave health care of equal quality across the country without reference to the ability to pay-- into a system of conflicting systems rapidly losing public trust while hoovering up to half of most provinces' budgets.

What will follow over the next few weeks are field notes from close encounters with this system in the beating heart of it--the most populous part of this country, downtown Toronto. I am going to tell you the story of the care received by a brilliant man who enjoyed more than fifty years of being the strongest, brightest, most interesting man in any room, but who now struggles to retrieve his former self from a mystery illness.

Everyone who has become sufficiently ill to end up in a Canadian hospital will have a similar tale. Hospitals have become places where certain facts must be endured, and the stories they engender get widely shared. Hospital rooms usually have at least two beds, unless a patient has private insurance permitting a private room -- a space assigned in a hospital only if is actually available and these days, with downtown hospitals operating at 105% of capacity, mostly not. This is not a bad thing: being alone while ill is definitely not a good thing. Most people thrown into hospital rooms together help each other, entertain each other, learn from each other, watch each other's backs, call for help when their roommate can't. Most roommates get to know each other quickly, sharing hard facts about the states of their bodies and minds, and sharing these facts as well with each others' families. How not? They are all crowded into a space divided only by thin privacy curtains which provide no privacy at all. There are exceptions to such communal aid, however. More on that later.

And so: medical care delivered in an acute care hospital, a rehab hospital, a long-term care facility, or at home, is by definition intimate. Nurses, nursing students, personal support workers, physiotherapists and occupational therapists, speech language pathologists, doctors, medical students, and especially cleaners all have to deal with: eruptions of patients' bowels and urinary tracts and their unpleasant stoppages; the spillage of blood; the regurgitation of wretched hospital food; patients' inabilities, including the inability to speak and consent to care, to clean themselves, to rise from their beds, to sit unattended, or even to be conscious. Patients have to deal with: nurses who are exhausted from 12 hour shifts where the only rest is sitting at the computer station; the mistakes made by the kitchen or the pharmacy which go uncaught thanks to a shift change: too few helping hands, too many needs, and too much time spent in wet diapers or worse calling for someone, anyone, to come to the rescue; doctors who are third or fourth year residents who know less than they think but assert their authority anyway; physiotherapists who  must watch their patients lose ground because there is no budget for them to work on weekends; senior physicians who don't respond to requests for information so other staff must be chased for basic facts (what does this medication do, what are its side effects?) and to correct the simplest errors (actually he doesn't have high blood pressure, or didn't until he came here). Hospital corridors sport security guards sitting outside of rooms where patients, out of their minds with delirium, or suffering one of the many forms of dementia, howl and bellow for help they have forgotten they just had. It's horrifying how quickly one's heart hardens to their cries.

Everyone who walks into a hospital becomes a part of someone else's story. One day, a few months back, I was in a hospital elevator when an older woman in a wheelchair rolled in, pushed by a helper. The woman had a great many tats, a few straws of hair tied in a bristling knot on top of her head, gaps instead of teeth, all attesting to an interesting life. She seemed to be in a state of existential terror. 

 "Which floor would you like?" I asked.

"Lady, do you think I'm going to rot in hell forever?" 

"Of course not," I said. 

"Oh thank you," she said," thank you. You're sure? "

Few have the time or energy to write about what happens when this system swallows them up as a patient, or as a family member of a patient. That is where journalists like me come in. It's our duty to find that energy, to take that trouble, otherwise nothing gets fixed until eventually nothing works. I am not going to bore you with statistics and arguments because both fail to show on how things really work: an actual human story lights the way to  truth. And this particular story touches on almost every aspect of our current system. It has moments both magnificent and awful, punitive and graceful. It reveals grossly inefficient, costly, error-ridden decision-making cheek by jowl with brilliant insight. If this blog were a podcast, the background score would be something dire from Stravinsky-- lots of energetic violins scraping at your nerves, engendering the feeling-- the knowledge-- that chaos is pounding at the door, on the verge of  finding its way in.  

Chaos might have been averted with proper planning by bureaucrats and their political masters long ago. Way back in 1996, the number one bestseller in Canada was a book by demographer David Foot and his co-author Daniel Stoffman called Boom, Bust and Echo. Foot made it clear that the Baby Boom generation would soon crash upon the gates of all government systems. The book made it clear that as the Boomers reached age 65 en mass (now!) they would develop or acquire a host of diseases and frailties, creating a tsunami of demand for health services that would last for at least another 30 years. Many Canadians read that book: it was on the bestseller list for two years. And its predictions have became facts. Acute care hospital emergency hallways and even ward hallways are now filled with Boomers lying helpless on gurneys, suffering from flu, broken hips, acute heart disease, strokes, diabetes and other chronic issues too numerous to list. The necessary beds to care for them have not been supplied. The necessary staffers to manage those beds have not been supplied either thanks to years of cutbacks at medical and nursing schools to save operational money (those rising fees for service!). Capital dollars have been spent, yes, and there are lovely atriums in some leading teaching hospitals as well as shiny new diagnostic machines and endless rows of computer stations to keep track of all the new information spewed forth. However, one still cannot get health information easily transferred from hospital to hospital unless someone walks over a disk or a thumb drive or a piece of paper. And those new machines and plaqued buildings cannot substitute for knowledgeable staff who change sheets, wash, feed, and medicate patients too sick to do for themselves.  They do not substitute either for the healing powers of trained hands and minds. Acute care hospitals are also jammed because governments failed to prepare sufficient rehab hospitals to provide after-care for patients discharged yet still too ill to return home. The rehab hospitals are jammed because home care is insufficient, so patients cannot safely go home from rehab, though they must, and they do. The rationing of home care is why, so often, patients end up back in acute care.  Again. Long-term care beds are insufficient to meet demand, which further backs up both the rehab hospitals and the acute care beds. There are stoppages at every turn.

A home care system has existed in Ontario in one form or another since the early 1970s. Personal support workers until recently were dispatched by non profit agencies under the control of regional organizations called Community Care Access Centers according to how much time an assessor concluded that each patient was entitled to. The amount of care determined by the assessor often differed radically from what patients actually needed, and  it differs still. In some circumstances, elderly patients are offered help in 15 minute increments, barely enough time for a frail older person to turn around and say hello. Turnover of personal care workers is rapid, meaning there if often yet another new face presenting itself at the door, and for older people suffering from memory issues, that can be very hard. One CEO of one nonprofit providing such care told me that her own sick mother  was assigned only two hours of care a week though she needed help "24/7." Personal support workers who provide this care are especially few and far between in rural communities and can take hours to get from one home to another, so there is a great gap between the care available in urban settings versus rural ones. The old and frail, needing help with the toilet, shower, and dressing, often have to settle for a shower only three times a week managed by a PSW who is rushing to get out the door to the next client within minutes of arrival. 

Ontario's health system is now carved into 14 regions administered by LIHNs--Local Integrated Health Networks. The former Community Care Access Centers merged with these LIHNs last year. LIHNS sort of include hospitals, both rehab and acute care, as well as long term care facilities. But in Ontario, hospitals still retain their own boards so there is a struggle for power and control between LIHN and hospital boards. Yet this reorganization was supposed to lead to greater efficiency, less bureaucracy, lower costs, and therefore better service. As the story I am going to tell will show, very little of that has come to pass.

And in fact none of it could come to pass. Home care gets only 5% of the $63 billion dollar Ontario health budget, though demand for it has shot up by over 40% in the last five years and will continue to grow as the Boomers age. The non profits which provide this service get an annual budget from their LIHN which does not change though needs may rise and fall. A bad year for flu drives up needs. If by chance these companies don't use every dollar allocated to them in a given year, the surplus is clawed back, and the next year's budget, which is based on the previous year's spending, will be smaller. So these companies behave as bureaucrats do. Service is generally rationed in spring: if demand falls, services to patients become more readily available in the autumn. In other words, it's your bad luck luck if you need help in April. With minimum wages in Ontario going up to $15 per hour, and PSWs paid about $16 an hour, and with a union now in place, the first labor negotiations between unions and these care entities are headed for trouble. The LIHNS have no way to get more money for these services other than from government. The non profit companies are locked into annual contracts with the LIHNs. The personal support workers are grossly underpaid for the skills they have and the work they do and mainly get no benefits. So we're looking at the possibility of a strike. If there is one, who will take care of the hundreds of thousands of Ontarians relying on this care?The emergency wards of acute care hospitals, that's who.

So no surprise that everyone, from PSWs to their supervisors, from LIHN assessors to an experienced CEO of one non profit care provider described the whole system to this journalist using the same words-- these words.

 "It's a disaster. "

Next week: chapter one.